Together We Know
Op-Ed: The Forgotten Warriors of the AIDS Epidemic
Early long-term survivors need help, and there aren’t any Wounded Warrior associations reaching out to us.
December 01 2016 7:00 AM EST
May 26 2023 2:38 PM EST
Early long-term survivors need help, and there aren’t any Wounded Warrior associations reaching out to us.
In November of 1977, while in my sophomore year of college, I came down with what appeared to be some sort of infection.
I was on the tennis team, and not wanting the whole squad to come down with anything, Yale admitted me to the student hospital. I was given every test they could think of to diagnose my flu as I had night sweats, a rash, mump-like swollen lymph nodes, and thrush. My immune system counts were on the low side, and I developed a list of things I knew I didn’t have. After my symptoms subsided in a little less than two weeks, I was discharged with a supposed clean bill of health.
My doctor walked me out of the building saying, "Well, you’re fine now. You probably had some sort of virus." Of course, today if you walked into a doctor’s office with these set of symptoms, you would be given an oral HIV test and told about what happens to the human body when one "sero-converts" and you develop antibodies to HIV. Times have changed.
On this World AIDS Day, December 1, I will enter my 40th year of living with HIV. I have seen a lot over the years. In the melee of the early and mid-eighties, I saw too many men I knew get sick and die suddenly, after having most of their lean muscle mass boiled off their frames by the disease.
I still have those PTSD moments of being in Jerry’s hospital room, seeing him in a fogged up oxygen tent struggling to take every breath made painful and difficult by pneumocystis pneumonia. He motioned me to come into the tent so we could hear each other. I was terrified, and looked around the room for reassurance I wasn’t going to hurt him.
A nod from his lover, and I was in the steam touching his sticky "old person" hand bawling my eyes out. It was the first time I ever touched someone I knew was going to die since my dad had died of lung cancer when I was a teenager. And it would not be the last — not by a long shot.
We hugged and had a good cry. Jerry, being several years my senior, tried to comfort me. Can you imagine that? He was worried about how seeing him in this condition would affect me. His humanity in that moment was something I will never forget. His last words to me were, "Don’t let it do this to you."
Jerry Falwell, co-founder of the Moral Majority, once said, “AIDS is not just God’s punishment for homosexuals. It is God’s punishment for the society that tolerates homosexuals."
That was the day AIDS became real for me. We have learned a lot about the disease since then. For instance, at a recent conference of The AIDS epidemic’s medical luminaries from both France and America, hosted by Dr. Robert Gallo, one of the medical researchers presented the results of his efforts to back trace the epidemic in the US, which indicated that in 1981, when Dr. Michael Gottlieb presented those first five cases of Pneumocystis to the CDC, there were already 250,000 people infected with the virus. In the beginning, what was mistakenly thought to be a more virulent, fast acting virus was actually the disease proceeding along its course without any intervention.
One of the most important points supported by all in attendance was that the AIDS epidemic could not possibly be over with 37 million people still living with HIV, and only 17 million receiving treatment.
Last year alone, 2.1 million people were newly infected, yet I still hear on two of the three major network national news shows that the "AIDS epidemic is over…”
The point of this conference was to make sure the AIDS epidemic was not lost in history, so that we as a society won't make the same mistakes that were made in the 1980s.
Back then, I thought working out to an absurd life-sparing level would keep my body from wasting away and dying. I worked out like a fiend, taking every steroid I could get my hands on. I was ahead of the curve when it came to bodybuilding in the gay community, and I took a lot of flak from my straight friends (as well as others) for looking ‘freakish’. But let’s be honest here, there were also perks of being the muscle man in gay circles. Still, I did steroids to escape the fear and feelings I was having, as more and more of people around me were sick and dying.
By 1987, I was living in DC. After two senseless double blind studies at George Washington University, I drove out to the National Institute of Health with my best friend and volunteered for whatever clinical trial would take me. I was 29, never expecting to see 35.
I figured if I hit the jackpot, a drug in my study would be an answer to AIDS! If not, the drug was useless.
So many of us — HIV positive and negative people — were desperate to do something to help, and this worked for me. Unfortunately, the study I was in combined high doses of AZT and DDC, a new drug being put in studies by Roche Pharmaceuticals.
It was revealed that DDC, while effective in the test tube against HIV (so was battery-acid), was also toxic, and put all 80 of us through a gang of side effects and risks that were unfathomable to me:
The first side effect was a full body rash that. For some of us, it was so painful that we had to be hospitalized until our skin “sluffed off,” as in Stevens-Johnson syndrome. Thankfully, that one bypassed me. The mouth sores, however, did not. Eating required gargling with Lidobenelox, a thick pink emulsion of lidocaine, Benedryl and Maalox that looked like the hand soap in most public restrooms. Some, the unfortunates whose sores reached down their esophagus, would have to swallow the stuff. After that, they rarely felt like eating.
About five weeks into the study, after seeing our waiting room become less full, I feared the study would stop. I was rooting for this one to be a success for so many reasons that weren’t about me. I felt invincible, like I was going to live forever. After all, I was the big healthy muscle guy in the study.
Denial served me well, that is, until I experienced a side effect that would change my life forever.
I took a friend, who was in a different study at the NIH, out for what ended up being his last restaurant meal. When we arrived, all eyes were on us — it hadn’t dawned on me that we might look a little scary. Everybody we knew had various lines and bandages hanging off them, and the host placed us in a very private corner of the dining room. About 10 minutes after our food came, I started dropping my utensils for no apparent reason. In a surprisingly short time I could not open my mouth wide enough to put food in. All I managed to do was slurp it off my plate. Something was wrong. I paid the check and we bee-lined it to the NIH.
Joe’s driving was a revelation, as he was seeing a blurry triple image at best. Back then, the section of Georgetown Pike we used to access the NIH had no lighting. Unlike today’s post 9/11 fence, armed security gates, and bright lighting, the NIH Campus was dark and wide open when we drove to the front doors of building 10, the research center and hospital. Joe stumbled in to find someone to help me, and by a stroke of incredible luck, one of the fellows from our study was the on-call physician that night.
Rick Rosenberg greeted me with, “Oh, hello Mr. Chud, you know we are not an emergency room, what seems to be the problem?” I tried to tell him through my clenched teeth as Joe, having had a brain biopsy earlier that day, had been unable to speak clearly enough for Rick to understand him. Admittedly, there was an element of comedy, which was a gift in my eyes.
Before I knew it I was on a gurney. Rick was on the phone with the head of AIDS Research at the National Cancer Institute of the NIH, Sam Broder. His marching orders were to draw some fluid off my knees, which were more swollen than any of my other joints, then admit me to the ward on the twelfth floor.
After 30 minutes of repeated failed attempts to drain anything from my knee, I saw Rick crying. I asked him to stop. I will never forget the look of his bloodshot eyes as he dried his glasses, apologizing for having failed and causing me so much pain. Rick’s care was emblematic of how much we all felt NIH was on our side. I tried to comfort him, and we agreed to throw in the towel. He was under a lot of pressure to perform, and in the end it wasn’t that crucial.
The next morning, Dr. Broder came into my room with the rest of the study fellows in tow. After mumbling around my bed for a couple minutes, he said, “Ya know Jim, if you can just get past this side effect. The virus hates this drug,”
Through my clenched jaw I replied, “Sam, this isn’t the quality of life we discussed at the beginning of the study.”
“I guess you’re right," he responded.
He took me off the study, telling my research fellow Stan Liebowitz to make me comfortable. Stan crushed 3 pills in a cup of water and put a straw in my mouth asking me if I ever had a Percodan. When I shook my head, he said, “You’re really going to like this.” We both laughed.
Ironically, my second day in the hospital was the same day ACT UP was outside Building Ten, putting a chain and padlock on the doors, accusing researchers of being corrupt, slackers, hiding all of the good drugs from the public, and many other things I knew were not true. As I was watching the scene on TV, a nurse came in my room and said something like, “Can you believe what is going on outside. It’s frightening.”
Of course, being emboldened by both my pain meds and steroids, I demanded to be wheeled down there so I could tell them a thing or two about how wrong they were. She laughed at me, replying, “Yeah, okay Superman, get real ‘cause honey, you ain’t going nowhere as long as I am your nurse. If you want to go teach them a lesson, then I suggest you put your clothes on and march yourself down there cause I ain’t gonna take you.” I gave into the whole situation, seeing the absurdity of it all.
My symptoms resolved in three or four days. I was told at the time that my immune system had mounted a response to my cartilage, and that my condition was a lot like Rheumatoid Arthritis. What no one realized at the time was how much damage to my cartilage had occurred, or that the process would continue for the rest of my life at a subclinical level until all hell broke loose.
What really surprised me is that at the time I was taken off study, they didn’t plan on monitoring me going forward. I asked about it and was told there was no funding, and nothing in the protocol about following people after the participation phase was done. At the time, I remember being really shocked, especially in light of the trajectory the epidemic was going, and the concern with finding the key to long-term survival by AMFAR and others.
It became alarmingly clear we were considered disposable since we would probably die in a few years from AIDS, so no questions would be asked about why we died. The other sad fact was that being homosexuals made us that much more disposable.
I was reminded about Legionnaire’s disease, which, after 12 people became ill at a convention elicited an all hands on deck response from the federal government. It was a problem whose scale and lethality were miniscule in comparison, yet the government’s response was immediate and comprehensive.
This was in the day of the ‘Patient Zero’ witchhunts when so many Americans wanted to find a homosexual to blame for bringing the epidemic into our country. In the end, that frenzy and waste of time only served to energize the gay rights community — at least we knew who our enemies were.
In 2003, pain in my lower back and most of my supportive joints reached a point that drove me to the local orthopedic surgeon. My first MRI in 14 years showed so much damage to my spine that the radiologist didn’t believe they were my films.
In 12 years, I have had over 80 operations on my spine, neck, and major joints to try to ameliorate the legacy of that clinical trial. I am now 7 inches shorter than when I entered the study, since all my disks are gone. There are more than a few people who, upon seeing me for the first time since my bodybuilding days, have no idea who I am until they hear my voice.
One day in 2009, I had heard from my local HIV doctor that the head of the 1987 study was still at the NIH, and that he had taken over the spot formerly held by Dr. Broder. I decided to call him and ask if NIH would check me out and see if they had any ideas for how to deal with my condition. This was at the time I first began to depend on a 4-wheeled walker to be able to walk.
I had no idea of what being “disabled” or living with a disability really meant. It surprises me how long even the simplest tasks took. My drive to do something for other disabled people shifted into hyper-drive from that moment forward, and today I am working hard to make a difference in the lives of other disabled seniors.
When Dr. Yarchoan, the aforementioned investigator and current director of AIDS Research in the NCI answered the phone, I introduced myself, and after what seemed like an eternity, he said, “Is this some sort of joke?”
“No, what do you mean? Do you remember me, Jim Chud, you know, the big guy with the joint problems.”
Then came the realization: “No way, really, oh my God – it can’t be…” He yelled down the hall, “Hey Kathy, you are not going to believe this, but Jim Chud is on the phone!” He asked me how I was doing, and I told him I was calling about my condition. He stopped me to explain his surprise at hearing my voice. “Mr. Chud, do you know how many people there are that can tell the tale of what high dose DDC can do and did to them?”
I said no. Then, he said, "You. Period." A chill ripped up my spine. I knew I was alone.
I made arrangements to go back for a work-up, and was reminded of how humane the researchers at the NIH really are. He was concerned, happy, and eager to see me. He offered me any resources that the NIH might have to help me. I was overwhelmed by the whole occasion, especially since I knew that the funds for my visit were coming out of his admin dollars, not from any study or drug company.
Since that day, I have thought a lot about other people in the study, and other studies that — we were like soldiers, volunteering for the task of saving lives and helping protect our nation from ravages of the war against AIDS. I have spoken to a couple of other people I know were also in the studies that went south later in the epidemic, and both of their lives were completely destroyed by what happened. They've sice passed.
After an exhaustive search of my own, I found no one else who is still around to talk about the study and consequences they suffered. I know they are out there, and maybe this article will tease out some of them out.
In the early days, everyone was desperate to find a solution to HIV infection, and many harmful drugs made it to market before things like kidney stones and peripheral neuropathy cropped up. Thankfully, most of these symptoms can be treated. The reckless abandonment practiced by large pharmaceutical companies and a lack of willingness to take responsibility is what angers me now. I only hope that when the next big disease hits, in places like cancer research, a more humane responsible approach is taken.
Drug companies that made and continue to make billions of dollars from drugs minimizing their losses because of men and women who — like myself — volunteered and received drugs that failed, have never once reached out to any of us to offer a simple thank you, or to see how we were doing after our trial experiences. In my opinion, this is reprehensible.
Early long-term survivors need help. And there aren’t any “Wounded Warrior” associations reaching out to us.
I remember the pit of depression many people at the NIH fell into because of unending pain, fatigue, malaise, neuropathy, lost jobs, lost houses, lost lovers and lost families — in the days when AIDS was a darling of the fundraising set, some people got help.
As I have seen the amazing groundswell of support for our vets returning from Iraq and Afghanistan, which I feel is more than deserved, I have hope for more humane treatment moving forward. I am saddened to see how the AIDS Warriors — the Forgotten Warriors — have been treated. I have had the resources to make a life for myself, but the vast majority of people in my study cohort were further along in their disease, and were left to fade away.
For a long time, I had overwhelming survivor guilt because I could not see the purpose in keeping myself around, when so many good men and women had perished. That changed one night in the recovery room at Cedars Sinai, when after one of my earliest procedures, as the anesthesia began to wear off, I sat up in my gurney/bed, and could not inhale.
I looked around the sea of beds, and no one was there to help me. As I started to panic, understanding that my lungs had collapsed, I was flailing around and beating on the rail of my bed. I paused to make that “Hail Mary Prayer” to God. It went like this: God if you will just let me take my next breath and live, I will spend the rest of my life helping others with this disease and other disabilities to the best of my ability.
As soon as the last word passed through my mind’s eye, my lungs opened, and I took another breath. The honor, hope, and humility of that moment changed and continue to change my life.
So, now that you know my story, here are my wishes for this World AIDS Day:
I want the world to realize this epidemic is far from over.
I want them to know how important it is to volunteer for studies and other opportunities to help.
I want other people like myself to tell their stories if they can, that somebody listens and cares, so that younger people learn about the worst of the epidemic and are taught never to make our mistakes.
And most importantly, I want us all to understand each other a little better...
Jim Chud is the founder and CEO of Advance Abilities, former chariman of West Hollywood Disability Advisory Board, and boardmember of National AIDS Housing Coalition.
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